In October 2017, 11-year-old Chris began having problems in school. His regular teacher had gone on vacation, and Chris was assigned a new behavioral specialist. The changes disrupted Chris's normal routine, making him extremely anxious.
He began to act out, kicking his desk and tearing his homework. When he was especially stressed, he sometimes left the classroom altogether. "When he gets overwhelmed, if he doesn't know what to say he will leave," says Chris's mother, Isabel.
Isabel was concerned both by Chris's behavior and by how his teachers dealt with his outbursts. In some instances, they physically restrained him, which made him even more agitated.
Like many children with autism, Chris has anxiety, ADHD and sleep problems. To help with those issues, Chris's previous teacher had allowed him a 20-minute nap when he asked. But Isabel learned that his new teacher would not let Chris nap if he had had an outburst. The teacher would deduct points from his daily tally when he had one. That reduced his chance to get rewards, such as extra computer time.
Hoping to help her son's educators better understand his condition, Isabel pointed them to SPARK's website, which offers resources for families affected by autism. She sent links to a webinar on managing frustration and anxiety, which outlines different strategies for preventing and dealing with outbursts and other frustration-triggered issues. "Chris might appear calm, but he has constant anxiety about what's going to happen," Isabel says.
She also brought them a copy of SPARK's first 'Snapshot,' a report describing characteristics of people who are enrolled in the study. Isabel said the report helped Chris's teachers understand how common sleep and anxiety problems are in autism. Nearly 1 in 5 SPARK participants have sleep issues, 1 in 6 have anxiety and roughly a third have ADHD.
Isabel also wanted Chris's teachers to understand that despite Chris's strong language skills - he can speak in sentences and hold a conversation - he has difficulty reading social cues. That makes even simple interactions difficult. "He needs to be constantly reminded; he can't grasp a concept like others can," she says.
Chris isn't alone. Nearly 60 percent of SPARK participants can use long, complex sentences. But strong verbal skills can sometimes mask the extent of social and other impairments in people with autism.
Along with discussions with the school committee, SPARK and other resources helped bring about a change in how teachers dealt with Chris's outbursts. "Now they allow him time to calm down before they interact with him, because it's not a teachable moment," Isabel says. "He no longer gets points taken away so he can sleep."
Isabel hopes SPARK will continue to provide resources to help parents and educators, such as examples of positive behavioral strategies that serve as alternatives to behavioral restraints. "Having this access for parents has been tremendous," she says.